Last Wednesday Atti had another eye surgery. His second, but probably not his last. Did you know there are eight muscles that surround each eye? And they each have to work with precision not only with the other seven muscles, but with the eight muscles of the other eye. It’s a miracle we aren’t all wonky eyed. Controlling muscles is kind of a hard thing if you have CP, and particularly in Atti’s case where one side of his body is more impacted than the other, so getting his eyes pointed in the same direction is going to be a long long journey.
Of all of his surgeries, this one is the hardest on me. Drops in the eyes every few hours, can’t get his face wet for weeks, we have to guard carefully against infection, he needs a ton more supervision, and the healing process is absolutely gruesome. His little hazel eyes look bright blue up against the solid red of his eyeball, the skin around his eyes puffed up and blackened like a boxer.
But he’s already so happy. He’s actually watching television with me – he’s rarely had much interest before – and now when we read books he actually follows my finger along the words. He’s been singing and talking and jumping and rejoicing, far more excited than I expected him to be. I certainly don’t act like that when I get new glasses.
But for me, glasses are just a simple corrective thing I need. Poor eyesight is a nuisance but it doesn’t keep me from expressing myself, or participating in anything I want to participate in, or being recognized by the world. But it does for Atti. His vision is great, but his depth perception is bad, which means that while he can read every individual word I put in front of him, he can’t read a book because his eyes can’t follow the lines. He struggles to draw or color or write his letters. He fails all the tests at school that require him to put items somewhere – puzzles, sorting, all kinds of things I didn’t even realize were important.
And people make judgments about him. That little wandering eye tells people things about his mind that just aren’t true. They see that eye go off and they think he’s more limited than he is. They think he’s simple or intellectually disabled, as if it was intellect that made our body parts obey. They think he’s not listening to them and so they can talk about him as if he’s not in the room, as if he can’t understand, as if he has no opinion or ability at all. If most of our conversation is through body language and eye contact, a simple thing like a wandering eye means he’s got two strikes against him.
Hopefully not for long. The results so far are promising, but this isn’t the end. Hopefully it will be enough to allow him to participate at school more, which is what I really want. It would be nice if people would stop making judgments, but what I want most for him is to be able to do what he loves. If he could read books and write letters, his eyes could wander around the globe for all I care.